From signing up for an incoming local gym last week, to Amy Tenderich’s recent post about online-community members not having had sufficient diabetes-related education, to yesterday’s American Diabetes Association Expo at the Javits Center, a confluence of events and concerns presented a series of ideas to me.
Not all will be feasible; not all will be appropriate to any given online diabetes community. Some may be reinventing the wheel.
Diabetes Awareness, Initial Outreach, Membership Drives
Besides word-of-mouth and people finding us (and other online diabetes communities and charities) through online searches, one might consider tables at local street fairs and health fairs for community outreach. Some of these tables/booths can be fairly inexpensive (under $50 – what one of us might reasonably expect to pay for a night out), and require little investment other than a folding table, some sort of canopy against the sun (which one might be able to borrow, rent, or purchase inexpensively at the start of camping season), a chair, literature, and two or more people to man the table.
In a street fair venue, one might or might not expect to see a table from a major player in the D-awareness arena (such as ADA or JDRF). They may, or may not, be useful allies or co-exhibitors. Other sources of co-sponsorship could be local doctors, hospitals, or drugstore chains (CVS and Duane Reade each had a major presence at yesterday’s ADA Expo in New York City.)
In a health fair venue, one would expect to see those major players setting up their own literature, screening, and/or awareness; the purpose of TuDiabetes’/EsTuDiabetes’ presence (or the presence of any other online community or group of online communities) would need to be a stand-alone table aimed at gaining new members.
Peer Initiated Community Outreach
Unfortunately, the need for diabetes awareness and, uh, diabetes fellowship, is not limited to those of us with access to computers. While I expect the ADA to have a literature, fundraising, and/or volunteer-call booth at health fairs, and while they have one-off community programs, what they don’t seem to have are the ongoing support groups that many people with diabetes need. You know, the need to vent when your numbers don’t want to behave according to expectations, when you can’t find a fresh veggie to save your life, when you can’t figure out to, er, “healthify” your traditional ethnic cookery… The need to keep up to date on our understanding of how diabetes affects your body. The need to find cheaper strips and meters, an understanding of what to do with those blood glucose readings (if you’re even taking any – especially true of older T2 PWDs).
As The Other Half and I discussed my perception of need, the analogy we came up with is that of the computer user groups of the 1980’s and 1990’s. The clubs were entirely peer-organized and peer-run, met regularly at a consistent location, and always began with “random access” questions from the floor – where anyone could ask any question about computers, from the most basic to the most advanced, and could expect the rest of the group to respond to the best of their knowledge and abilities (this could range from a definitive solution to “call the manufacturer”). Following “random access” was a presentation – either by a club member, a vendor representative, or an expert in a particular specialty – showing off new hardware, new software, or new ways of doing things.
(In the diabetes-focused analogy, presentations could range from a member – or a vendor rep or pharmacist – showing off a new meter or discussing a new recipe, to a roundtable discussion on diets, to a CDE discussing how to make sense of one’s glucose readings… (Yes, I’m assuming a lesser-informed community here.))
While PC User Groups (and Mac User Groups) had nominal annual dues (operating costs were primarily meeting space and a printed newsletter – and later on, a Web site and e-mail list), many were low-cost, and provided peer-based education.
Two major issues with this sort of idea are getting it into the communities where it is needed: the low-income, ethnic communities, and communities of elders on fixed incomes and limited mobility – and being able to empower these people to take control of their lives and their health. While I can’t foresee any manufacturer or pharmacy being able to reduce its prices for medications or supplies, church- and community-based organizations could create economies of scale to improve lives – fruit and veggie purchasing cooperatives, mail-order supply-purchasing cooperatives, a community computer with cable and software for collecting and analyzing one’s blood glucose levels…
I’m sure I’ve not thought through all the issues, and I would not know how to go about getting even a pilot project like this organized, but…
Physical Fitness and Diabetes Awareness
Here it comes: you’ve checked your blood glucose, it’s in range, you get on the elliptical at your local gym, run up to speed, things seem to be going fine, and suddenly, in the middle of your workout, thunk. Or beep. Too high or too low, your blood glucose levels have interfered with your workout again. The trainers at your gym don’t know squat about diabetes and don’t have enough information to guide you through a more effective workout and training regimen. The exercise physiologists over at the Diabetes Center know how to get you moving after an injury, but don’t know squat about physical conditioning and bodybuilding. Or, the DC doesn’t have enough available equipment (or is too high-cost, or is not easy to get to at right hours) for you to use it as a gym.
There has got to be a way of bridging this perceived gap: a way of developing a corps of certified personal trainers with enough specialized diabetes education to get you safely through your workout, and to assist other trainers at the gym in developing training regimens for the gym’s diabetic members. (Same thing goes for other chronic issues such as hypertension, arthritis, etc.) I don’t think these trainers would need to go through the entire CDE curriculum, and I do expect they should be able to command higher rates because of their additional expertise.
The question is, being outside of both the community of personal trainers and the community of CDEs (and educators of CDEs), how do I get the two communities together, and talking to a cross-section of people with diabetes, to get something like this rolling?
Am I reinventing the wheel?
If infrastructure exists for any or all of these ideas, I may be wasting time and brain cells focusing on these ideas. Or, I may need to find where that infrastructure is, and find out how to hook into it.
But the bottom line is, at some point people are going to need to be assisted where they are located, eyeball to eyeball, with concrete methods for making changes based on limitations of income, mobility, and availability of goods and services. I don’t have all the answers; I may not have the most workable ideas. But no question can be answered until it is asked, and no issue addressed until it is identified. Concrete methods for focusing on and refining one or more of these ideas (or forgetting them) would be one step in getting from Point A to Point B…